5 Compliments You Need to Stop Giving About Children with Down Syndrome

Mostly.

Then there are times…well… that well-meaning, very nice people say things that just drive me crazy. I know that they are just trying to be nice. But whether it’s because I hear these things all of the time, or because they just aren’t the reality of the world I live in, there are a few compliments that make me batty…

1. “Children with Down syndrome are a gift from God.” This one is not untrue, and it doesn’t really bother me…I just hear it all of the time. A lot of the time, they tell me this while my other children are standing with me. I want to lean down to my boys and say, “Did you hear that, just kids without Down syndrome. Suckers.”

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All kids are gifts from God. The other thing that gets me about this is that by saying this, I feel like children with Down syndrome are put on a pedestal. I shouldn’t be complaining about this, but that pedestal further separates her from her peers, and honestly, makes me feel like I can’t just say she’s being a bratty three year old from time to time. People act like I’m committing sacrilege when I talk about my daughter like any of my other kids when they were toddlers.

2. “She’s so happy and easy all of the time!” My daughter is pretty happy. You know what? She’s about as happy as ANY of my other non-chromosomally enhanced kids are. Stereotypes do exist for a reason, and generally, it is seen that people with Down syndrome are happier in nature. This does not mean that they are happy or are easy all of the time. Abby is 2, and does what other kids her age do: throws tantrums, gets into things, colors on EVERYTHING, breaks stuff and freaks out. She has her own personality and can get mad as hell at you if you give her cause. One of my friends said something about her own child with Down syndrome that made me laugh: “She has Down syndrome, not a freaking lobotomy!”

3. “She hardly looks like she has Down syndrome!” Uhm? Yeah she does. She has a mixture of mine and her father’s features, expressed with the presence of that extra chromosome. She has all of the “classic” features of Down syndrome: the almond shaped eyes, the low set ears, and the lack of bridge in her nose. Saying that she doesn’t look like she has Down syndrome actually stings a bit. It feels like you’re trying to say that she’s pretty in spite of her chromosomal makeup. I think she’s beautiful because of it.

There is a difference in saying she doesn’t look like she has Down syndrome and that you don’t notice her Down syndrome. I love it when people just see Abby. They just see my beautiful daughter

4. “Just think! It will be like having a little kid living with you forever! Your child will never grow up!” First off, this one just isn’t true. Adults with Down syndrome aren’t children trapped in bigger bodies. They have life experiences, they learn, they fall in love, they do just about everything other adults do. It doesn’t mean that she won’t need significant, ongoing care throughout her life. And, though being a parent is super rad…I’m not the kind of mom that gets all bent out of shape to think of her kids actually growing up. I want Abby to grow up. I want her to be independent. And she will be.

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5. “I could never do what you do! You’re my hero!” GROAN. This is one of the biggest loads of crap I hear. I mean, I know people think that’s what I want to hear. It’s not. First off, how do you know you couldn’t do this? Had I been told that I’d be a mother of four kids, 2 with special needs, I would have said, “Yeah, no. Not me,” and run screaming from the room. You don’t know what you can handle until you get there, and until handling it is your only choice. Telling me that I’m your hero puts me on an impossible pedestal, too, that I can’t and won’t live up to. I’m a regular mom in an irregular situation. But these are my children, and I love and fight for them just as much as any other mom does.

Like I said, people are great. I’d rather have people tell me these things than the litany of shitty stuff people have said about her Down syndrome. I understand that people don’t know what to say and are just trying to be nice. And I love them for that. The worst thing you can say to a mother of a child with Down syndrome, by far though, is nothing at all.

Related post: I Never Knew I Wanted a Child with Down Syndrome

About the writer

Lexi Sweatpants is a writer, wife and mother of four. Her middle son has autism, her daughter has Down syndrome. She has sleep deprivation and a deep passion for candy.  She writes about all of this and more at Lexistential.

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Tomgee 4 days ago

Well said. All children are special. Well done you

Natalie Schroeder 4 months ago

I am one of those awkward people who doesn’t really know what to say & don’t want to come across in an offensive way. However, what I’d really like to say is how beautiful I think your daughter is! Usually though, I just smile & do a small wave at the little miss or man.

G money 4 months ago

I don’t love it when strangers talk to my kids but thankfully it happens infrequently. I can’t imagine how annoying it must be to have people constantly starting conversations with you and talking to your kids just to prove they’re not uncomfortable or whatever. To me it’s so fake! I treat little kids with disabilities to same way I treat kids without disabilities- I ignore them all!! I remember riding an elevator once with a stranger, both of us had our young kids with us, her daughter had DS. Some other lady gets on the elevator and is fawning all over the other little girl to the point she starts crying and tells the mom what an amazing person she is. The other mom looked incredibly uncomfortable! I don’t blame her at all. I’m sure the ladies intentions were good, but hello! Boundaries!!

J. Holmes 4 months ago

Insincere americans, who would have thought?
The best thing to do with someone who is slightly different is to treat them as if they’re not! Within reason ofc.
Tbh, just thinking of the ‘have a nice day’ crowd makes me want to throw up.

Jimmy Gamiao 6 months ago

Born with Trisomy 21, my now 13 year old daughter does not have “Down’s Syndrome”, we don’t like the term, label, or founding Dr’s recognition because it’s inaccurate in describing her. Dr. Down also described people with Down Syndrome as a Mongolian type of Idiot. I don’t believe parents of these children are satisfied with this description. My daughter’s name is Kina’u (key-nah-oo). In Hawaiian, it means “imperfect, minor flaw”. Which practically describes each and every one of us so called “normal” people. In other words, she is exactly like the rest of us with her own “specific” challenges, rants, issues, bitchiness, orneriness, and absolutely loving moments. YES, she keeps everyone in her life on our toes. She keeps us in line and forces us to stay focused with not only her care, but to also stay focused with our own health and well-being. We prefer to say that she has “Up’s Syndrome”. Sorry Dr. Down, but there’s nothing “down” about our girl. When “normal” children have bad days, special issues, fall behind in class, get low grades, or simply don’t agree with others, we don’t assign them a syndrome, especially one that’s inaccurate. My Up’s Syndrome girl is doing fine and will be fine in her long life ahead. Her gift to us was being born. Happy on Maui

Corina 7 months ago

I am a single mom and have a son with Down’s Syndrome who is almost four. I would also add that as they get older, the “reality” of the challenges are coming more to life. I also agree with all of your comments. I do love him dearly and realize that what I’ve gone through as a mom to continue to help him be healthy and have a place in this world is only understood by those of us who are raising these children. I need to be patient with those who don’t have this experience. I also see how disconnected others who don’t have a child with an extra chromosome are. I am also a teacher and boy has this opened my eyes. Thanks for the post!

BJ 7 months ago

This is so helpful. My brother just got a positive result for trisomy 21 on his and sister-in-law’s sixth baby, a boy. They are great people and will walk this road well. I want to make sure we support them well.

blah 8 months ago

I understand you do not like the comments, but they really are well meaning. I say to my friends with more than 2 children all the time that I don’t know how they do it and I genuinely don’t! I mean it as a compliment – when someone calls you a hero – enjoy it girl! Life is full of enough problems without worrying about well meaning (if not slightly irritating) comments.

Clemmie W. Ellsbury 11 months ago

I’m not that much of a internet reader to be honest but your sites
really nice, keep it up! I’ll go ahead and bookmark your website to come back later on. Many thanks

Candice 1 year ago

Thank you for sharing this with us. I am so happy to learn more about these children and how to not offend. I love all children and anytime I see one that is different, I’m always worried that I will offend them or their parents.
They are different, and I do not see this as bad, just fact. However, I am always worried that I will do something or say something to offend. Thanks for the insight on what not to say. I’d love to hear some things that would be good to say. That you would like to hear.

Anderson 1 year ago

Was the problem that they could not read the shirt bcsauee of their insecurity problem.You maybe should have read it for them.This is from knowing a sweet downs kid who is very happy but her parents are more concerned about their appearance than she will ever know.Maybe a shirt for them saying ; Yeah our kid has Downs what have you done to help. Ask Me !

Michelle 1 year ago

This is another thing i don’t like to hear. calling anyone with Down sydrome disabled, last i checked they are completely able! My son is only 5 months old and im doing my best to not let it define who he is. Yea he has down sydrome, so what? Everyone is equal, and should be treated that way.

Michelle 1 year ago

I agree with this article completely! I had my son in February 2014 and when I share the news of him having Down syndrome im told that god specialy chose me for this and that everyone is praying for me or well he’s still cute though. I know people are trying to be “nice” but maybe they should word things a little better.

Rae 1 year ago

And now you know, from the other two comments, how truly easy it is to inadvertently offend. I’m sorry those are the only responses you got up until now. While it is true that it’s better to say, ‘girl with DS’, than to say, ‘DS girl’, I want to encourage you to do that playdate!! Don’t be too afraid of offending. Yes, there are people who are so ready to take offense that their sensitivity will limit their child’s opportunities because they will scare people out of even trying. But as a gramma of a child with DS, I have tears in my eyes at the thought of how thrilled my daughter would be if someone invited her son over for a playdate. DO IT!!! Maybe that momma will be willing to overlook any accidental offense. And if she’s not willing, well, then you’ll know – sadly – that playdates might not work out in the future. But you might, on the other hand, make a wonderful friend for yourself too!

Kathyd 1 year ago

My son, who has a chromosomal bonus, is 29. My favorites over the years were “Don’t worry honey, he’ll outgrow it” — from a nice old lady; and from a pregnant young woman: “Is there something THE MATTER with your child?” “Well, he has Down syndrome.” “Well, I don’t have to worry about that because I eat organic food and don’t do drugs.”

Adrienne 1 year ago

I don’t have a kid with Downs, but I have 2 autistic boys and some of these are the same for my kids. I always get the “He doesn’t seem autistic, I know someone who’s autistic son is *insert shrug and grimace*”. That drives me nuts too. It’s funny how some comments can just be so rude to us living it. Good luck to you and yours, she is gorgeous!

allison 1 year ago

I hear the ‘i dont know how you do it’ a lot. My son with ds will be 3 in August, and (SURPRISE!) my typically developing daughter will be 2 in Sept. Yes, 1 year apart. I get asked EVERY SINGLE DAY IF THEY ARE TWINS. Without fail, unless I don’t leave the house. I also get the ‘i dont know how you do it!’ or ‘youve got your hands full!’ Yes, Im really really tired, but I love them and I just do what I have to do. You have no other choice. Same for any other parents, with 1,2,3,4 etc children. You just do what you need to do, because there is no option not to. Though there are some days where I just want to quit, so we end up watching netflix all day.. and Im ok with that :)

micy lynch 1 year ago

this is fabulous :) neither of my nonstandard issues kids have down syndrome, but there are the stereotypes for everything. there are some of the exact things saids.you put it perfectly.

Jen 1 year ago

Omg.. People really say that shit?

Melody 1 year ago

Sorry. Apparently I needed to overuse “as well”.

Melody 1 year ago

Thank you! This is perfect for my daughter as well. She has cerebral palsy. There are well meaning comments I can’t stand as well. One that drives me crazy is: “How long is her life expectancy?” Uh, I would say the same as yours or mine, but I haven’t asked my crystal ball lately. Or “Oh, I know exactly what you’re going through! My second cousins ex husbands sister has a CP kid.” Kill me please.

Anna 1 year ago

I heard the same thing about having twins… I didn’t think I could do it either before I had them. I tell people that you think you couldn’t do it untill you find out that you don’t have a choice, the you handle it. Same with having a special needs child or losing a child. 99% of people will find a way to go on and deal with the situation because you have no other choice.

Tracy Hyer 1 year ago

Thank you for this. I don’t have a child with down’s but I have one with aspergers, and another with multiple issues (all invisible at a glance) and have found that except for the one about specific features, these comments or variations are used across the board about special kids. Number 5 is the one I hate the most (well 4 too). I am no hero, I did what I had to because I was given these kids. Like you I would have run like hell if I had been asked in advance. As to 4, well my youngest will be very much a child in a grown body for life. Not what I chose, and the only comment possibly worse is when people ask or suggest that I am less a mom because I want him to live apart from me as an adult.

Lisa 1 year ago

Amen!

krystle 1 year ago

I think one more should be on this list. The “my uncles brother’s second cousin had down syndrome.” Then silence…. ok?!?! You’re waiting for something to relate with or even a good story, most likely won’t happen. This gets under my skin.

Theresa Franklin 1 year ago

I read this article with great interest. Please let me say I won’t presume to believe I know how you feel. I don’t have a child with down’s syndrome, although I have a child with special needs. I am a retired teacher and director of special education. To all parents of children with Down’s, I’d like to say: I have taught your child. I have counseled you on many things. I have educated other parents about your child while staying within the law of confidentiality. I’ve written their IEPs, and helped you plan for their future. Yes, I know people say stupid things. We are still learning how to treat all people with disabilities. Please remember that only 100 years ago–a short time in history–children with down’s syndrome were locked in the attic and not discussed in polite society. We have come so far. Please be patient with us as we learn what is appropriate and what is not. As a parent of a child with disabilities, the only one of these compliments that I would take issue with is the one that infers that my non-disabled children are not a gift from God. I would inform the speaker that ALL of my children were a gift from God and ALL have special gifts from God. Again, I asked–Please be patient with us. We’ve come so for and yet have so far to go.

peter murphy 1 year ago

Great great tenor and conclusion to this article. I always think of what I thought or how I felt about down syndrome before I was given the greatest girl in the world.

Pam 1 year ago

My husband and I are raising our beautiful granddaughter Akyla who is 5 and starting Kindergarten in the fall (yay!). She is hilarious, loves to dance, is extremely active and loves to create and draw. And, oh…, did I mention that she has Down Syndrome? As many have said, Down Syndrome does not define the child – the child just happens to have Down Syndrome, like I happen to have a heart murmur. It is just part of her makeup.
I love it when people are surprised when she does something “normal” (whatever that is). I’m like – she is a person like everyone else and she is capable. When I have disciplined her in public, I have had people tell me that I should not do that because “she’s a Down’s” Ooooh – that makes me mad. So I should just let her run wild because she has an extra chromosome? We treat her like her brother and sisters and encourage others to do the same.
Great article – thanks!

lynn 1 year ago

So very true. Hats off to you Mom. Your so very right all children are gifts from God. There are many down sydrome children that grow up to have lives of their own, marry and even have children of their own. If they are raised just like other children are raised to be strong men and women they may need a little extra help but they are only limited if they are sheltered or not given the tools to have a life when they get to be adults. I pray that all parents teach their children no matter what how to live a productive adult life even if they do have some slight limitations there is nothing that an adjusted child couldn’t do with the proper love and guidance from parents. Gods blessings comes in many different ways.

Keri 1 year ago

I get the stupid comments even though my children look perfectly normal. One has Asperger’s and one we are still trying to get diagnosed. The comment I hate the most is I could never do what you do. The comment is made assuming they are all normal. I have three kids. It really isn’t that much harder to handle three kids than one, except when they all want to do something different. The comment I hate the most is you sure have your hands full. I really just want to say actually my hands are empty, they all walk now. I know people mean well, but sometimes they are so rude and insulting it drives me crazy both for myself and for my friends that do have most obviously special needs kids.

Karen 1 year ago

Thx for this article. One comment, though.
She is ridiculously cute. :)

Katy Epling 1 year ago

Yes! I totally agree.

Katy Epling 1 year ago

1-Your daughter is beautiful!!! :-)

2-I love, love, LOVE this. Thank you for saying so eloquently what many of us moms think about this topic. I love that you were not angry and condescending, but you did a great job of explaining why these “compliments” can be frustrating. We mamas who have kids with special needs have to give a little grace to others who are genuinely trying to be encouraging and nice, but it is great to have articles like this to point to.

Karen McGregor 1 year ago

Yes, you can say something, just as you would to anybody else you might bump into, even just ‘hi, how’s it going…’ or ‘lovely day, what are you up to?’….. see how easy it is to communicate in a relaxed way. I have a 15 year old son with D.S. and he is more than happy to have a conversation when someone talks to him!

Sue Roediger 1 year ago

People are still saying that stuff? My niece (who has Downs) is going on 35 and is amazing. We always say we pity anyone who assumes she is stupid. She plays a mean game of poker and quite well comprehends “poker face”. She keeps score , accurately, at baseball games. It is funny when some one thinks she is only pretending and asks “what’s the count?” and she replies “3 ball 2 strikes, top of the fifth inning we are up by two, Piug is on deck”. She sings the National Anthem at her local Special Olympics, with such feeling. As you see I could go on and on – we are so proud of her. I thank you for this article…….perhaps, someday, it won’t be necessary.

craftylikeiceiscold 1 year ago

I feel like a lot of you are taking this in a different vein than it was meant (though I certainly could be wrong).

I did not feel, from reading this, that Lexi Sweatpants is condemning people or saying someone is cruel or even thoughtless for saying these things. In fact, she acknowledges several times that people mean well and she appreciates that.

I read things like this and there are sometimes things where I think “Ohmygosh, who would ever say that?!” and times where I think “I just don’t see anything wrong with that one” (though not actually in this). Mostly I think “Awesome, now I know better than to say that” or “I’m so glad I read that/that other people are reading this.”

Katie Miller 2 years ago

Your daughter is absolutely adorable. I treat all kids the same no matter what. So I didn’t realize there are some complements that could be taken inappropriately. Thank you :)

TT 2 years ago

LOVE this!! I totally empathize with you. I go through the same thing of knowing people mean well, but being annoyed nonetheless. My take on it as that they feel we, or our children, need encouragement. I actually had someone ask me if my son had “all the Downs or just some.” Lol! It was annoying, but I know they’re just searching for some type of compliment…Thank you for writing this. I thought I was alone!!

Joyce Page 2 years ago

From a mom of 1 adult with DS, two adults with Aspergers, I couldn’t have said it better!

One of them too 2 years ago

And we are so very glad not to be you. Take your hate somewhere else.

Jeff 2 years ago

what a load of shite, get your head out of your arse and embrace the attention. These type of posts make it harder for people to interact with Downs and special needs in general. It is first of all a good thing that people are even talking to you about it and not just staring! And it is true, most people could not do what my Mum does taking care of my sister.

Tyler 2 years ago

I disagree with some things said on here I joined a family with a downs child. #3 that is wrong every child is beautiful in there own way just because we know what our downs child looks like does not mean everyone else does I met my future child and had no clue she had a gift she made me smile the first second I seen her and she is gorgeous. This gift might be common in our world but it does not mean everyone know everything about it , don’t bash on ppl for say ,asking things educate them what are the things you would say , ask if u where not in the position you are in. I am blessed to have a downs child and to help others out in there blessings

Kelly Schultz 2 years ago

I LOVED this blog post. Thank you for writing it; my four year-old has DS, and every word rings true!

Luff2sail 2 years ago

I think our kids with Down syndrome do tend to be happier, they generally don’t have the ability to judge others which makes them happier in general. They generally don’t look for the underlying message behind a person’s words which makes them happier. They often approach many things that they have done before as though it is new, which increases happiness, I chose to learn from my beautiful daughter how to be happier. She has now taken her leave, and as a friend reminded me, those who are considered the least here on earth, will be treated as first in heaven. I believe that she is teaching those in heaven how to approach life with zeal and zest, and how to love their neighbors as themslves in a way that they did not understand on earth. I look at how my daughter lived, and I pray I can hold on to the lessons she taught our family.

Louise Parker 2 years ago

I guess you’d rather have people point and say, “Look at that poor retarded girl”? You ARE right. We DON’T know what to say. What we WANT to say is “I’m glad it’s not me”.

Sandra Lynn 2 years ago

For those of you who have turned one person’s opinion into an opportunity to hate, consider this.
We all have different lives and life experience. We all have different circles of support from friends, family, support agencies etc (some of us have none). We all have different hardships and comforts in life. All our children are all different. We all experience living with disability in a different way due to demographics and our own previous life experience/learning (where we live, financial security or lack of, social circles, family circles, the people around us, siblings, partners, career, spiritual positions, etc etc). Be kind to each other. And from time to time, pay someone else a compliment just because, not because they are different.

marktravisinfo 2 years ago

I’m with Julie Borkowski on this and wish I could express my thoughts as well as Julie does.

I’ve read three similar posts to Scary Mommy’s in the past fortnight and each saddened me.

To me, each post said ‘people are trying to be nice but I (the parent) don’t like it’.

Me? I disagree strongly.

I hope strangers keep saying well intentioned, however clumsy, comments. They make my day.

Lisa Van Drese 2 years ago

I am fine with people asking questions. I actually appreciate it, because until my son was born, I had no clue about Down syndrome. My son, who is almost 3, was born with the condition. I have learned a great deal from him. He has brought our family closer and has taught us a whole new level of acceptance. I have referred to his extra chromosome as the “love gene” because of the lessons we have learned from him. Despite any challenge Max may face, he is developing at a wonderful pace. He makes up for anything he may lack with excelling at others. He is amazing and smart and changing minds of many. My biggest hot button would be “Downs baby”. I do not like any language that sets us apart as human beings, which is why I use “People First” language. You wouldn’t refer to a kid with cancer as a cancer kid. I wouldn’t want to be referred to as “allergy girl”. It is a person with Down syndrome. Just be respectful. People can complain about the politically correct way of saying things, but what it all boils down to is having respect for your fellow man/woman.

Lisa Van Drese 2 years ago

My son who is soon to be 3 has Down syndrome. He is typically very happy, but he can throw a fit like nobody’s business!! People with Ds experience every emotion that a person with 46 (people with Ds have 47) chromosomes does. I always tell my husband that the extra chromosome is the “love gene”, because our son has taught us so much about acceptance. I feel as though God gave us a special gift with both of our children, and in spite of some challenges, my son has proven to be nothing but “normal”.

Stephanie 2 years ago

Great article although I don’t have a Down syndrome child I have one with severe autism and another with arthrogryposis. People sometimes don’t think, thanks for sharing it gave me a good laugh to know I’m not the only one getting the crazy comments.. Nice to know you are not alone…

mt45 2 years ago

Everyone should try to understand that others haven’t lived their life, so they’re not always going to say the perfect thing. If you try to reach out and connect with others in your life, you’re going to occasionally have stumbles. But those who reach out have courage. Would it be better if we just ignored everything new and different to us in fear of offending people about a subject we don’t know much about?

MommyAngela 2 years ago

I think “Downs child” is even worse.
Or how about, “I work with kids who are Downs.”
uggggggggggggggg

MommyAngela 2 years ago

Amen. I’ve heard all of these, and while I know the person means well, I am secretly rolling my eyes at them.

Rebecca Lucas 2 years ago

I have a son who has Down Syndrome and this is spot on. I agree with everything you’ve said another one I get is,” Wow, look him- ain’t that so cool that he can do that?!” ( Referring to basic everyday things)- Children with Downs Syndrome can function and learn things just as much as Children without, and yes it may take longer but they do it.- Thanks so much for your post.

Heather 2 years ago

She is a girl with Down syndrome, not a “Down syndrome girl.” This one is like nails on a chalkboard to me. She is a person first, not defined by her syndrome. :-)

Kelly J McCloud Wallander 2 years ago

My son is 13. And all I can say is wow what a attitude.

Jacob 2 years ago

When my wife was pregnant with our 11month old twins, we were seeing a perinatal specialist due to the high risk nature. Lots of long ultrasound appointments. During the one that we found out about their sexes, a boy and a girl, he told us that the measurements on the girl were borderline for normal. He did a new blood test on my wifes blood, looking for the T21 markers. It was positive, and he asked if we wanted to confirm it with an amneo and said if not we would just carry on treating it as though our daughter had down syndrome. We did not have the amneo, but by having the diagnosis early they were able to involve a cardiologist during the pregnancy and immeadiatly had all of the extra tests done upon delivery. The early knowledge gave us time to educate ourselves, we did not tell our two older kids, about what to expect. We were greatful for all of that, as finding out upon delivery would have been more to deal with than the already hectic process of having twins.

Aria Clements 2 years ago

My daughter is autistic, but this post still applies. I know autism and down's are different, but well-meaning societal treatment of them and many other non-physical disabilities tends to be the same.

1) This one makes me roll my eyes. She'd be just as valuable with or without autism.

2) HAHA…wait until you see a tantrum. Oh my god, she'll go on for HOURS and make me cry and call her grandma to see if hearing grandma helps.

3) I think people think autistic kids will appear like Gilbert Grape so you can tell quickly, even without certain features, that a child is disabled. Unfortunately a kid who doesn't "look like" she has autism is a kid a lot of people think excuses are being made for.

4) I've had this one too. Charlotte's been in therapy for over a year now and had made advances. Sometimes she seems neurotypical but other times it's easy to tell she's not "normal." She just started Head Start in the part of the program for kids with special needs (special needs is considered to be at-risk as well, and 10% of the HS spots in my area are reserved for children with disabilities who need the extra help). We don't want her to be a child forever, but to have as full of a life as possible.

And frankly, the idea of someone never growing up is terrifying. We won't always be alive. She needs independence.

5) What are parents of special needs kids expected to do, toss their kid in the trash and try again? It's not easy, but we do what we have to do.

Penelope Smith 2 years ago

I am expecting my "Gift from God" in a couple of weeks. I have heard some of these things said already. Ummm…yes, ALL children are a gift from God? Am I special because I am going to have a special needs child? No, because it could have been any one of you! We have already faced a challenge in our lives – our son fought STUPID cancer for 13 months adn died at the age of 21 months old. When we found out our baby would have DS we have been told things like "well, if anyone can do you it is you" Why?!? Because we have already faced a challenge in our lives??
I sense I will be having a lot of educating of people around me soon!

Penelope Smith 2 years ago

why does anything have to be said? if you have a question about the down syndrome, then fine, but why does the fact that a child that is differnt have to be pointed out?

Tara Wilson 2 years ago

Your a fantastic writer and I love how you get to the point with tact and humor but say it just how I sometimes am screaming it on the inside! Thanks!

Marilyn Rose 2 years ago

No one said to stop being kind. But it DOES get tiring to hear the same lines over and over again, especially when most of them really aren't as valid, or validating, as the ones saying them hope they are. I think this post speaks to those of us who are there, have been there, and who want to acknowledge just how irritated we can get with well meaning but misguided people. Sorry you don't understand how good it feels to be able to vent to others who "get it".

Marilyn Rose 2 years ago

LOVED this. Shared it on facebook immediately after I read it. As the mother of three VERY…..interesting….girls :), who all happen to have that funky extra chromosome, I related to everything you said. I have heard it all a thousand times. Now you need to sell t-shirts (plus sizes, please!) with snarky comebacks pre-printed for those frequent encounters with the well meaning people of the planet.

Jenn Reilly 2 years ago

I think your daughter is pretty damn cute

Rachelle Vigil 2 years ago

Lexi Sweatpants Magnusson But when you criticize the well-meaning comments people DO have, I think it increases their anxiety about the situation and makes them even more likely to say nothing at all, out of fear of offending you when they mean to uplift.

Rachelle Vigil 2 years ago

The worst thing about those tests is that they come with a risk of miscarriage. So you could end up not having a choice over whether to keep the baby after all.

OTRmommy 2 years ago

Where can I get a copy of that book? I have 2 young children at home and work in special education and I would love to get a copy!

Gregory Biersmith 2 years ago

Tremendously proud of your Family. All are an inspiration. Congratulations.

MomChalant 2 years ago

I’m guilty of one of these – people with down syndrome are happier. But I actually thought this was a proven fact, so I’ve believed it… and said it a time or two. I thought that something with the extra chromosome caused a person to be happier… I don’t know exactly, but someone informed me of this years ago.

I totally agree that all children are a gift from God.

Mimi Kopulos 2 years ago

Someone has to complete the circle; looks like your Maddie took on the role in your family. Your family is blessed to have each other in your lives.

Jamie Bachewicz 2 years ago

Great post…and yes, DS kids are the same as normal kids. They like the same things, have good days and bad days. When I was younger I was lucky to have an aunt who cared for a boy with Down Syndrome. He had the same name as me and called me “Big Jamie.” Playing with him was so much fun…what an imagination he had! Now that I am older, and a mom, I have the pleasure of having, Michael, the grocery bagger at my local supermarket, to talk to. We talk about professional wrestling and he tells me about his nieces and nephews. It is awesome. He is just a wonderful person…period.

Mary Beth Stanek 2 years ago

Oops, first day back at school. And, I have enjoyed getting to know Jack better going back and forth to AWANAs. Guess what kind of stories they're telling on the the way home now? Scary stories. Wonder where he gets that from?!

KTGR 2 years ago

Tam– “wow, bitter much” doesn’t seem like a well-articulated, compassionate response to someone who is offended by the way people stare at her niece with CP. You don’t have to know about CP to know that it isn’t polite to stare. And Cynthia, I cannot speak for Lexi, but as a mother of a child with special needs, I’m guessing what she means is something like, “sure go about your life, but my child is every bit as important to me as your child is to you”, so don’t pretend she doesn’t exist–or by extension that I don’t– because you see us both as “less than”. Cynthia, I’m sure you don’t behave this way, but you would be surprised how many people do.

Mary Beth Stanek 2 years ago

Okay, you just made me cry. Megan has been a blessing to so many. I loved the first stay back to school this year – going out for recess- and so many kids running up to Megan and greeting her. She has made some true friends! Keep the faith!

Pam Taylor 2 years ago

I'm glad I know you, John.

Phil Bryde 2 years ago

Thanks for posting what you said and the article. All your kids are beautiful.

Cynthia Bischoff 2 years ago

Lexi Sweatpants Magnusson, why is the worst thing when people say nothing? That's not a combative question; it's a real one. We pass millions of people in our lives; why does each person have to say something? It seems to me that people don't have to say something to acknowledge any children, whether special needs or not. Everyone is entitled to go about their lives. Can you explain more about what you meant? Thanks.

Tam Sdg 2 years ago

Marilyn Irene Romanick I'm sure you've made your share of mistakes with regard to the situations and conditions others have to live within. Try to be more openhearted to others errors.

Tam Sdg 2 years ago

Wow, bitter , much? Your attitude is probably responsible for people "staring". You are a fool to take you disappointment out on others. You need some professional psychiatric help. You can't expect others to know about the life of your niece , why should they if they have no reason to know.I'm sure you knew nothing about CP before you had a need to learn about it. Grow up.

Mary Humphrey Krienen 2 years ago

Membership has its privileges

Marilyn Irene Romanick 2 years ago

My daughter has cerebral palsy too but fortunately it has just affected her legs and she is so smart,she gave birth to a girl too and jeez there is nothing wrong with that child,she walked when she was 9 and half months old and she is 13 months now and running everywhere. So people should really watch what they say,for words can hurt worse then physically pain,trust me.Am so proud of my daughter,regardless.

Tina 2 years ago

“Did you hear that, just kids without Down syndrome. Suckers.”

Love your sense of humor!

John Humphrey 2 years ago

Hard to believe it's been 8 years since I wrote the following:

I figured this is a great venue to announce the birth of Megan Caroline Humphrey, born 6-21-05 at 8:23 a.m. by C-section, weighing 7 lbs., 14 oz. at 20.5 inches long. She joins Mary (nearly 10), Maddie (5 and a half) and Jack (2). Leslie is doing fine. I didn't feel a thing.

You all may or may not have heard Megan has Downs Syndrome, aka Trisome 21, which invariably makes potential well-wishers feel uncomfortable.

Our Maddie is completely disabled with no specifically recognized syndrome. While we had an indication Megan MIGHT have Downs syndrome, those of you similarly situated can appreciate how dreadfully disappointed we were when it was confirmed at her birth. Actually, that's an understatement. We were angry, sad for Mary and Jack, sad for us, blah, blah, blah…

Then we felt guilty for those feelings.

Anyway, we never thought we'd experience the blessings in our lives that we have with Maddie. There are good and bad days parenting any child, as you all well know. So we pray for the strength to focus on the added blessings that Megan promises and to avoid feeling sorry for ourselves.

It humbles me to think of those of you who've lost spouses and parents, and overcome adversities greater than I'll ever know. I draw strength from you, your prayers and your experiences.

The point of this note was to let you know we understand you may not know what to say or how to say it. "Congratulations" is appropriate and "I'm sorry" has also struck me right. I just don't want you to feel awkward. There's no wrong thing to say.

Alyssa MacVeigh 2 years ago

I refused any and all such testing with both my boys. I wasn't going to get an abortion regardless and saw no sense of worrying about it.

Julie Borkowski 2 years ago

So now people are going to go back to being afraid of talking to us or our children. Because we might be offended that their complement is inappropriate?

It makes no sense to me. My child brought me out of my shell. I realized that people did not think I was a weirdo introvert, and they wanted to tell me how happy/beautiful/friendly she was, and it made me smile.

But now all these 'hip' parents want to come out and change that. Complementing someone with special needs is a really great thing to do. Even if you stumble with the right thing to say.

God is pulling us out of our comfort zone so we can grow our hearts bigger and become better people.

Kristen Mae at Abandoning Pretense 2 years ago

I always thought I should say *something* to recognize a disability, that pretending a child with disabilities was just like everyone else would somehow be construed as phony or pretentious on my part. I’m starting to get it though; these kids WANT to be treated like everyone else, and their parents would like for them NOT to be singled out all the time. Am I getting it?

I agree with some of the other posters… it can be difficult to do/say the right thing. We try, though. Thanks for the tips!

xoxo

Robin 2 years ago

This is such a hard line to walk. I have a friend with two special needs daughters, one of which is severely disabled. People have stopped to ask her about her child and she has practically lost her shit over it many, many times. No matter how understanding and kind the person is, she finds it rude and intrusive. She doesn’t want people going out of their way to notice or point out that her daughter is different. I can’t pretend to understand how she feels and quite honestly she scares me a little. So I try to say as little as possible. Which would upset you, Lexi, but works for my friend. So you can imagine why some of us would be afraid to say something. It’s never done to be mean but rather to avoid causing any hurt feelings. Thanks for your post.

Heather 2 years ago

I love this, thank you! For those wondering what is ok to say … how about “What a pretty dress.” or “Those pig-tails are adorable.” or “What a gorgeous smile.” The same compliments that you would want to hear about your own children. The 5 compliments listed here are at best back-handed compliments – not something you want to hear said about your child. If you have questions about the particular disability or your child has questions, it is fine to ask most parents are happy to talk.
As for some parents not wanting to discuss it, we are human. Just like you have bad days and just want to get a loaf of bread and get home – so do we.

Mary 2 years ago

We were always asked if we wanted the test. As soon as I learned that Spina Bifida would most likely be seen on the ultrasound (and possibly be repairable in utero) I told the doctor there was no point in the test. It’s not as if we would do anything differently if the test were positive.

Brandi Walker Tanner 2 years ago

Honestly, I have been through both, I had no idea our daughter was being born with Downs until after I had her. I always thought if I had known when I was pregnant I could have been more prepared. Several years ago a became pregnant again and found out this child if carried to term would be born with some type of disability. I went in to a severe depression. after several months I miscarried. Looking back, for me it's probably best that I didn't know with Aliah.

Brandi Walker Tanner 2 years ago

It can be easy…parents start at home by teaching there kids tolerance about the differences in everyone, not just with appearances. I agree, I think that some people just don't know what to say. When I had my little Ali, I can't remember anyone saying congrats until she about 3 days old and that was the genetics dr. I think it's important to remember that a person with a disability is just that, a person, so when you give a compliment your complimenting them about something that doesn't have anything to do with there disability. I also agree, I am very comfortable straight up being asked about Aliah's disability(Down syndrome). There are a lot of misconceptions so I'm happy when someone asks rather than assumes.

Julie Borkowski 2 years ago

Michelle Cliffe, There are plenty of us who appreciate your complements. I hope it does not stop you. This post and others like it are making things worse not better.

Julie Borkowski 2 years ago

I am sorry but I just do not agree. I am really tired of all these realists trying to tell people to stop being kind to people with special needs. It is getting depressing to see more and more of these posts hitting the internet and hitting Facebook. Its not helping!! It gives the haters more reason to hate. Kids with special needs bring out the much needed skill of giving complements to EVERYONE. But the general public needs the motivation and the practice. So please stop stifling that. Our kids have special reasons for being here. Stop fooling yourselves, and other people. Its not helping!!

Beth 2 years ago

I’m glad “he/she is so cute” isn’t one bc I say that all the time.

Heidi Ehle 2 years ago

Lexi, I love you. Totally in a stalker-ish kind of way. 😉

Jenny Curtis 2 years ago

Amie Orr, because of fertility issues, I had many tests done while pregnant with my little one. Not because the results would have somehow changed the outcome, but because I as a mother want to be as prepared as possible for raising my child. If she were to have been found to have any special needs, I would have had the time to learn as much as possible before she was born.

Adre Bezuidenhout 2 years ago

Michelle, what a nice post. Being a parent of a special needs child myself, I understand completely where Lexi is coming from and agree with her 100%, having said that, I can not tell you how i appreciate what you have said. If i had to give you an answer, i would probably say, you talk to a parent with a special needs child how you would talk to a friend when you pass her in the street, i myself get into situations when i see other parents with their special needs children, and often have to bite my lip not to say exactly what i myself hate to hear. It is such a complex situation, but the most important thing is having empathy, whether you say something stupid or not, just by having empathy means the world!

Lena 2 years ago

Okay, the one about your little girl being happy all the time made me giggle because I remember reading another blogger’s post about how her child with Down Syndrome got remarks about how she was supposed to be happier and more well behaved than she acted!

HD 2 years ago

I was excited to see this article and read it hoping beyond hope that any of the things you listed would not be something I had said to my best friend. She’s the first of our group of friends to have a child with DS. I have zero experience with it and from the start would have been afraid about saying something accidently insulting or insensitive if it were anyone other than my best friend. She’s seen me at my best and my worst, and would no doubt forgive me my ignorance. Happy to report that I haven’t said any of these things, but I’m sure I’ve erred in other ways. Thank you for the post and the lesson on how to be more sensitive!

Brittani Smith 2 years ago

On behalf of a mom of a daughter with down syndrome who had no clue before I had my daughter I don't get mad about anything unless your mean. Which any parent would get mad if your mean about their child. I know most people don't know much about down syndrome, and please feel free to ask me anything at all. I am very proud of my beautiful strong daughter and see her educating people by the way she is every day. So no problem here. Just be yourself, be kind, and remember are children are amazing in their own way. No ones exactly the same but every child is a treasure. And when they know it, they shine.

fran 2 years ago

My favorite – god only gives you what you can handle.

Amie Orr 2 years ago

My doctor didn't even give me the test…he asked what I thought about the outcome and I stated that there was no point in doing the test because the outcome would not be affected. I like the way he presented it to me as if it was a crazy notion to even have a choice or run a test. Made me respect him more.

Tabytha 2 years ago

I totally agree with you on this whole post…. though I get odd looks all the time just getting out of the car with my husband and 6 (yes 6) kids! 3 of which I gave birth to, 1 we recently got guardianship of, and 2 step children. Of our kids, my son has ADHD, youngest has a heart defect and of course, my step daughter has Down Syndrome. And even with all the kids around us, we still hear all about how she is a gift from God…. No…. All my children are a gift from God! And I am no hero, no superwoman….. just a mom :)

Ada DollytheBird Keli 2 years ago

This article makes some valid points, not only about children with DS, but also about children (and adults) with other handicaps and disabilities as well. The first rang soooo true with me because my late uncle (my childhood best friend!) had cerebral palsy and I know that my mother, who was the younger sibling, was treated like a second class citizen many times and it hurt her terribly. In fact, she still holds a lot of animosity toward my grandmother's parents who she says practically ignored that she even existed. The 'hero' thing is so true too. At my grandfather's funeral last month, so many people talked about how fantastic/wonderful/inspiring he was for taking care of my uncle all his life. I kept thinking that my grandfather would most likely have shrugged his shoulders, shook his head, and said, "He was my son. It's nothing special that I took care of him, it's just what you do." Same as my mom…everyone always tells her how wonderful she was to have taken care of my uncle and my grandfather. She will say that if it hadn't been for my grandfather, she wouldn't be here and that my uncle was her brother and best friend, so of course she took care of them. "When you love someone, it's just what you do." As for the 'say anything except nothing' at the end…I know that my grandparents, my mother, and my uncle would likely say that they would have wanted people to only say what they would say to anyone else. Period. If you don't usually 'make' over someone's child, then don't do it. If you're a gushing kiddie person, be a gushing kiddie person. Just be yourself and allow others to be themselves. Simples. :)

Annette 2 years ago

I usually just say something like, “Your children are beautiful. :)” and move on. There really is no reason to be nosy about a stranger’s child, atypical or not.

Natalie 2 years ago

Lexi – great post! I’ve been active in the online Down syndrome community since college thanks to my older brother, who has Down syndrome. I’ve read many posts of similar content by many parents. I always laugh a little at the “they’re always happy” comments. Granted, my brother can adjust and adapt better than anyone I know (seriously, his “rebound” is nothing as long as his stuff is set up and his few creature comforts are there), he most definitely is not happy all the time. And, as his younger sister, I’ve made him angry often. :)

Anita Cruise 2 years ago

Because of my age (36) my doctor did a test when I was 16 weeks pregnant, he told me my youngest daughter was "high risk" for being born with Down syndrome, he asked if I wanted an abortion, not just no, but hell NO!!! He asked what I planned on doing after she was born, and I replied, I'm taking her home, I mean really? 6 months later, I had a healthy baby girl! Shes almost 17 and fixing to graduate high school a year early. smh at that doctor for even suggesting an abortion.

Michelle Cliffe 2 years ago

Lexi Sweatpants Magnusson As you say, Lexi, not everyone is open to conversation. I've been given cut eye on more than one occassion. Which also fuels the anxiety and confusion that I sometimes feel when discussing difference. Especially when my six year old sees someone with a disability and asks what's "wrong" with them. Changing the notion of "wrong" is tough, especially when I worry that I might say the wrong thing when trying really hard to say the right thing! So hard. So, so hard. :/

Frankie Laursen 2 years ago

Thank you for sharing this. I get #2 a lot, and even though my child is a “non-chromosomally enhanced” child (love that phase), it’s still annoying. It sets up the expectation that children should be happy and easy all the time, which no one should be expected to have to pursue or maintain.

Aimee 2 years ago

I love this.

I’m shocked by #4 as well. I love my son DEEPLY, but I don’t want him to stay 12 forever. Here in Maine there is a post-secondary program called STRIVE U ( http://www.pslstrive.org/striveu ) that helps young people with developmental disabilities learn the skills they need to live independently. It seems very empowering!

I’m curious to know: what do you think about the character Becky on GLEE? In your opinion, do you think that she is an appropriate, respectful depiction of DS, or does it miss the mark? (I for one LOVE that her inner thoughts are voiced by Dame Helen Mirren!!)

Lexi Sweatpants Magnusson 2 years ago

ugh, *across

Lexi Sweatpants Magnusson 2 years ago

Michelle Cliffe , I see what you're saying. It was one of the things I thought about when I wrote this. I wanted to get accross that people are awesome and that I would SO MUCH rather have them say ANY of these things than saying nothing at all to me or my kids. I'm very open about my children (not all parents are) and would love to talk about them or what we're going through. The worst thing though is when people say nothing.

Lexi Sweatpants Magnusson 2 years ago

Hi! I wrote this and can totally see where you're coming from. For me, the worst thing you can do is to say nothing at all. I'd so much rather you say ANYTHING, even if it comes out all wrong, than ignore me or worse, my children.

Pam 2 years ago

My aunt, who lived around the block from us, with my grandparents, for most of my life, had Down’s. I don’t think people know what to say. Even though Down’s was pretty much part of my everyday life, I find that sometimes I don’t know what to say to people. Right now, I will say that #4 on the list upsets me. At the core of it, parenting is hard. Period. And while Down’s presents its own set of challenges and there are also unexpected joys. For example, my grandmother was a mommy until she died at the age of 94, outliving my grandfather by nearly 20 years. I am convinced she lived so long because she had my aunt to take care of and she was never alone. On the downside, however, she was never alone, and she had to watch her child go through an accelerated again process. I think the hardest part was that not only did Grandma have to think in terms of babysitters anytime she wanted to do some grown-up activity, she had to make plans for someone to care for my aunt after she, Grandma, died. This was not the typical “If I die and my kids need care” scenario, but “When I die, my child will need care.” I saw how hard those final years were on my Grandma; as she was getting older, she was watching her child experience some accelerated aging. Now, when I see someone with a child with Down’s, I want to tell them “Prepare for the care that your child will need she he/she is elderly. Make sure to establish a support system that outlives you.” But you simply don’t say that sort of thing to someone with a child or young adult. In fact, nobody says this sort of thing. Nobody prepares you. But it needs to be said, so, I’m saying it now. Our family was lucky. We all lived nearby. As Grandma’s health declined, my mother began to care for my aunt. After Grandma died, my aunt lived for two more years, taken care of by yet another sister. Ultimately, she was cared for by people who had loved her, her entire life.

Kelly Nicholson 2 years ago

Spot on Lexi!! I always love your posts!

Melissa 2 years ago

Thanks for this post! There is a beautiful Down sydrome girl in my sons preschool class. I’d like to invite her over for a play date and now I feel more prepared to not (accidentally) offend her mother in the process!

Beth 2 years ago

Thank you so much for this post. I’ve heard all of the above and more in reference to my daughter.

Michelle Cliffe 2 years ago

Kelly Lucia If it were easy peasy for people, we wouldn't have posts like this at all.

Wendy 2 years ago

Sadly, a number of parents do treat their children differently. I worked in a group home for adults and one of them had to be taught to feed herself because her parents spoonfed her until the age of 20. They just didn’t realize how much she was capable of.

Arnebya 2 years ago

I know people men well, but…yeah. People be dumb sometimes. I’m probably one of them. But I can’t stop shaking me head at #s 4 and 5. With #4 — um, read a damn book you idiot (OMG is that rude?) and #5 — you could never do this? Raise your child? What? You’d give her back? My uterus is so not having that shit.

VanillaZambrana 2 years ago

I am guilty of this in my head ALL THE TIME. I worked with special needs kids when I was in college, and kids with Downs have such a big place in my heart, I just want to hug all of them. Every time I see someone in public, child or adult with the classic Downs features, I remember how sweet-natured and lovable the kids I worked with were and part of me just wants to reach out and connect with them or their parents, to give them a little high-five of support or acknowledgement, or whatever they might appreciate. But then I remember that to their own families they are JUST KIDS or just PEOPLE. They’re not 24/7 “precious angels” like some treacly Facebook chain post, and while their nature may welcome hugs from strangers,their mothers and/or the authorities might not. So I mostly just smile and say “Hi!” while sending out good vibes and internal high-fives.

Gina Badalaty 2 years ago

Totally well said! I really like #1. As the mom of a kid with Down syndrome and another with autism, I REALLY take this to heart. (No one's every said that about autism. Just sayin'.) And NO, one child is not more of a struggle than the other, and yes, all of them are gifts from God.

Kelly Lucia 2 years ago

If you want to discuss Down Syndrome, discuss Down Syndrome by asking about that condition directly; if you want to compliment a child, compliment the child without caveats. Example: "Your daughter is adorable!" Allow time for a gracious response 😉 "I have a question about Down Syndrome. Do you have a moment to talk?"

Easy peasy :)

Michelle Cliffe 2 years ago

I've seen lots of posts like this. But, it leaves me wondering…what should be said? Nothing? Discussing difference is hard, and most people (me included) often struggle with how to behave and what to say. I have a 6 year old who asks about people with differences all the time. I do my best to explain, but this post leaves me wondering if I am offending someone in the process. All the points in this post show that it's hard to be nice and not offend, since sometimes people offend with their niceness. It's super easy to tell us what not to do, but maybe a post on what we SHOULD be saying when we want to discuss DS and other differences? That would be helpful.

Cathy George 2 years ago

This is a fantastic post! My daughter is 12 (and also named Abby) and I want the world to see the funny, kind and sometimes stubborn person she is, not her DS. You summed up exactly how i feel. Thanks!

Leigh Ann Erdman 2 years ago

Actually I think anyone with more than two children are heroes and that includes my wonderful friend, Kelly Lucia, with her mini gang, who is my hero in more ways than one. I do not have children to my great regret and the liklihood is less with each passing day but I appreciate that I can live vicariously through the posts of others with children. I have to say it though, Abby is a beautiful child, so berate me if you must!

Sabrina 2 years ago

It never would occur to me to say any of these things, but #4 made my jaw drop. I can’t believe people think that, let alone say it.

Beth Foster 2 years ago

I learned a lot from this article, but the last sentence confuses me. I would think she would want people to say nothing about her childs differences, treating her the same as all the rest of the kids. Maybe she means she doesn't want to be treated like a pariah…it's a little unclear. Still, good piece.

Kelly Lucia 2 years ago

I absolutely love this, and I'm so glad you said it. Kids is kids, and moms is moms, and it would be a great relief if everyone could stop condescending to both because of some perceived "imperfection".

Safe than sorry 2 years ago

I understand all of the frustration at these comments. But I think people mean well, generally. None of those comments were intended to hurt or disturb–which is why I just keep my mouth shut. It is so easy to offend or say the wrong thing when you are confronted with a situation that is different than your own–it is best to just not say a damn thing rather than say something knicker-twisting.

Lisa Tompkins 2 years ago

I totally agree. That is why I have written a children’s book called “Why Are You Looking At Me? I Just Have Down Syndrome”. My 23 yr old daughter has DS and we have been dealing with the insane comments and stares for years. We are taking our book into daycare centers and preschools to read and maybe the education will begin with them!

Angela Burnfield Marsh 2 years ago

I agree. People need to learn that children with disabilities are people too. People with real hopes and dreams, just like the so-called "normal" people (normal, my ass). We get this all the time with my neice who has cerebral palsy + and people STARE at her like she's a freak show. Drives me insane and makes me want to scream "She has cerebral palsy, ya'll can quit being creepy now!!"

Emily 2 years ago

Beautifully said…this reminds me of the time a friend of mine once told me that I didn’t treat my son as if he had special needs. She meant it as a compliment, but I thought it was an odd and somewhat offensive remark. Why would I treat my son any differently than my other kids?

Kathy at kissing the frog 2 years ago

Lexi, I love this. I am going to send it to my sister-in-law whose 4-year-old has Downs. As a mom who has lost a child to cancer, I have heard #5 a lot. You do what you have to do. Period. You can’t imagine having to do it until you actually have to.

heather 2 years ago

wow. I know that a lot of well meaning people lose all reason when they have no experience with certain subjects, and try to be nice……but wow.
this is what I do, please tell me if i’m doing something wrong or offensive:
say hello to the parent.
say hello to the child.
say “I like your (hat, shoes, shirt, anything that is obviously new, or the kid is proud of)
compliment their nice manners, if they are displaying those nice manners. if they aren’t, mention something about parenthood, to parent. “about that time, huh?” (witching hour. kids have hungry, cranky, meltdown, tired, shitty times just hardwired in there.)
ask them if there is anything I can do, and if not, tell them they are doing a better job than I did. mine are not “special”, but still drive me insane.

Grace | Yummy Baby Gifts 2 years ago

Can’t believe ppl say #4 & #5… Thanks for giving us all a peak into your life.